Different perspective please

Hello I am married to a man with Crohns, and it often seems there is nobody to discuss how challenging it can be to live with someone who suffers daily. We have been together 2 years and the learning curve of being with someone in chronic pain is rough!
There is the lack of sex drive, sleeping on the couch for fear of mishap in bed, the refusal to seek new treatments (he has had for 25 yrs and is convinced doctors know nothing and he has figured out what works for him-it does not work for 'us' though), the expectation that I read his mind to know when he feels poorly or not... the feeling invisible when he is so consumed by how his gut is behaving...
I love him madly and want to be understanding and supportive (I am a nurse by profession-but not GI). It makes me sad somedays cuz when he feels good we have so much fun!

I think I have it a bit easier because it is my son who has crohn's and taking care of him is just part of the job as his mom. He has been away at camp this week and although I miss him terribly it is also kind of nice to be "off duty" for a week. I never realized how much I feel responsible for him eating right, taking his meds, reporting his symptoms. I know that I take it on myself and feel like I have to "fix" things if he isn't doing well. I am slowly trying to learn to let go as he will ultimately have to take control of his care and make those decisions for himself. Right now it is much easier to deal with when I can control things like what meds he takes. As a parent I can do that, as a spouse I am sure that is far more difficult.

I don't really have any advice for you, but I feel for your situation. When I was sick with Transverse Myelitis (originally they thought I had Multiple sclerosis) I didn't feel well and the thought of being chronically ill and holding my family back was heart breaking. I had a very hard time dealing with it and wasn't very fun to be around most of the time. I was introduced to someone who was having some health issues as well and it really helped to have someone I could vent to that understood. Maybe you could find someone who is a caretaker as well that you could connect with??